IVIg Information for Interested MS Patients

[funmonkeytoes]

*Momzilla originally asked me to post about my experiences with IVIg as treatment for MS.  As I was just looking through My Favorites on my computer, I found this link which I must have added when I was first on IVIg about a year ago......unfortunately I stopped treatment after developing a rash.  The IVIg was administered as an infusion once monthly, and I had four infusions total.  I was really beginning to get some energy -- and seeing that I was 90% bedridden at the time due to severe fatigue that did not respond to Provigil (or any other MS "fatigue drugs") -- I was ecstatic.  The rash, which was horrible and itchy....keeping me awake at night....was a complete disaster.  My neurologist put me on Tysabri after that and I had a total of five infusions and three flare-ups during my time on it.  When I was on IVIg I was seeing an immunologist for treatment, so I was back to him following the decision to withdraw the Tysabri as another "failed" treatment.  Talking with the immunologist also lead me back to IVIg -- literature and experience has found that sometimes just a change in the IVIg brand was enough to get rid of the rash.  I was excited to try it again and have had my first re-infusion -- but I am also noticing a return of the rash.  I called the DR's office and they have decided to switch brands again and biopsy the rash (to make sure it is really the IVIg's fault).  Apparently a rash side-effect is REALLY rare, and they've only seen in twice in twenty years of infusing!  Leave it to my body to react this way.  I am both disappointed and hopeful that I'll be able to continue with IVIg....even if it is really more for me to feel better -- not to slow the progress of the disease; for that, we have to wait for another drug to be released by the FDA or venture back into chemotherapy drugs.  HMMM.....  He [my immunologist} says Campath1H is looking promising.  I'll keep you all posted on how this develops - in the meantime, here's the link I found:

http://www.msadvances.com/faq.php3

Peace & Health,
Funmonkeytoes (Debra)

[sllowe]

Bump for you - before the mob squad comes after ya!

[Rena705]

WOW...YOU ARE GOOD!!!  Thanks so much ladies!  I am going to get my friend to check this out tomorrow!  Again...many thanks!

Rena

[Quixotic1]

BINGO!!  Thank you so much!

And where is Debra?  Did she leave us?  Someone go hunt her down.  We can't be left just like that!

Q

[Momzilla]

bump

[sllowe]

Thanks! I'll ask the allergist I'm seeing too, what's the difference between each of them.  They all end in 'reaction' though. . .lol ....yuck!

have a good one,
SL

[funmonkeytoes]

I asked specifically if it was an allergy, sensitivity, or adverse reaction and was told adverse reaction....I'll ask next time I am there why it is categorized as such.....but I THINK it might be the manifestation of the reaction.  I've read about IVIg allergies and they all seem to come on very quickly [during infusing] - and the reaction is systemic.  Perhaps that is why this rash is considered an adverse reaction rather than an allergy....Jeesh, who am I kidding, what do I know?  I'll ask and let you know what they say.

Debra

[sllowe]

Hi Debra,

I'm glad to hear you are doing well, even with the reaction.

Was interested in knowing how they determined or confimed that this was an "adverse reaction" and not an "allergic reaction."  Did they give you any insight?

Still trying to wrap my head around many things reaction related, so thought I'd ask.

Hope you stay well with your treatment.
SL

[funmonkeytoes]

I DO have an update for those of you that are interested and so thoughtfully wished me luck with my IVIg treatment (hey, I found out many call it IGIV).  When I came in for my second infusion we switched products and talked about possibly adding 1 gram Solu-Medrol pre-IVIg infusion.  It may help with the rash and be an effective prophylaxis for flares too.  That is still being decided between the immunologist and neurologist.  The nurse practitioner took one look at the soles of my feet and was astounded and apologetic.  As rare as an IVIg rash is....I have one.  No one wants to punch biopsy the sole of my foot -- so we are waiting to see if the Claritin and Vistaril she prescribed for the rash will help.  I can tell you after a couple of weeks post infusion I am doing MUCH better, the rash on my palms and soles is actually getting better - not worse - but my thighs are pretty bad.  I think both the new meds for itching is helping but perhaps my body is starting to calm down and not react so badly to the drug??  She confirmed this is an "adverse reaction" not an allergy or sensitivity to IVIg. I think they will be happy with these new findings [I know I am]....it was either try ONE more brand change hoping for improvement OR giving up.  I am so glad we are trying one more brand and that the rash [where it was the worst] is calming down.  I'm sorry I didn't get the chance to take pictures of my feet at their worst.....but Kristin (my immunologist's nurse practitioner) took plenty of pics to show the doctor who happened to be away the day I was there.  I received the office notes yesterday and they are calling it a "TRUE IVIg rash".....my neurologist was right......but what I feel is a sense of validation that even something only seen "twice in 20 years" has now been verified to be seen THREE times at their office.  Peace, love, and light to you all - thanks for reading and helping me keep up with this truly difficult situation.  I am blessed you are out there to support me....well, all of us out here in cyber space are blessed to have each other!

Funmonkeytoes (Debra)

[funmonkeytoes]

I am using mainly Benadryl right now to help with the itching -- but it sure keeps me knocked out with the other very potent pain medications I am on.  I have been prescribed Clobetasol, but it is a thick cream very hard to apply "moderately" (it is very potent) to a widespread rash such as this.  I will later have my daughter (one of them) take a picture of the soles of my feet where the rash is the worst right now.  I would like everyone to see it in case another of you EVER has an issue such as this.  I know it is considered a rare occurrence, but with MS and its treatments it helps for us to keep each other well informed if we can.  That is why these forums are such a powerful tool in helping all of us communicate and cope.  Well wishes to all of you...I will tell you how my next infusion goes (with the new brand of IVIg), and we'll see if this rash will respond.  I am hoping so.

[dowma]

Thank you so  much for sharing your story.  You've had such a horrible time of it I'm so sorry.  It sounds like you a have a wonderful group of doctors looking after you and i"m thrilled for you.  I hope that they can get to the bottom of whats causing the rash so you can continue on IVIG treatments.  You have tremendous strenght and courage and are always there for everyone on this forum.  Wishing you all the best.
Mary Beth

[sllowe]

Bless you Debra, for the strength you've gotten to fight a good fight.  You've got quite a story, and I pray that your body stops reacting to these meds. And, also, for the Drs, that combined they find out what common proteins, or ingredients in them specifically is at the root of the reaction.  I'll pray this, as you move forward.  

Are you able to take anything to help with the rash and itching?

be well,
SL

[funmonkeytoes]

I was diagnosed a little over eight years ago.  My first symptoms [the ones that brought me to the dr] was a numb and tingly little finger on my left hand.  Eventually the little finger just flopped over and the numbness and tingling were spreading to my other fingers.  When I saw my GP, that was the first I'd heard of MS related to my symptoms....I was just sure I had carpal tunnel syndrome.  Boy, was I wrong!  The first year after diagnosis was relatively quiet...I was still a "probable MS'er"; but the following years MRI showed additional lesions, and I already had a "moderate-severe lesion load".  I tried Copaxone first, then Betaseron, month grams of IV Solu-Medrol; then I woke up one morning unable to move either leg.  I called the neurologist on-call and she had me admitted to the hospital right away, where they started to run LOTS of tests.  To sum it up -- I saw three neurologists (including my own) and an oncologist.  They wanted to start me on Novantrone (or chemotherapy -- the scarier word).  They explained all the risks and with my legs unusable at that point, I agreed to do the two-year stint on chemo.  It was hard, but I made it through to a wonderful nine month remission...the longest remission I'd had since second year post-diagnosis.  After chemo, I was on Rebif for a while.....and unable to tolerate the drug reactions.  We then waited for Tysabri.  I had one infusion before they pulled Tysabri off the shelves -- and my neurologist decided to send me to an immunologist.  His expertise in auto-immune diseases and related off-label prescribing was what we needed.  I spent nine months on Imuran (an anti-rejection drug) with no luck [still flaring 5-7 times a year].....and then IVIg came up -- it was that or getting back on Tysabri which by that time was up for re-release.  I decided on IVIg, but after four infusions I had a terrible rash.  My neurologist looked at it and switched me to Tysabri.  I did five infusions, but I had three flare-ups during that time.  I wanted to go back on IVIg after reading that sometimes merely changing brands can resolve rashes or other reactions.  So, here I am...on IVIg (Intra-Venous Gamma Globulin) -- and the rash is back too.  They are starting another brand my next infusion and doing a biopsy of the rash.  Gamma Globulin is really a blood product.  The gamma globulins (or immune helper cells) are taken out of thousands of donated blood products, sterilized, and turned into a powder that's reconstituted when you come in.  IVIg is a very expensive treatment (about $10,000.00 a month), so you've pretty much had to try everything else for your health insurance to even consider it.  It gave me energy when I had NONE....and got me out of bed for a few hours here and there.  There's quite a discussion about whether I have worsening relapsing remitting ms or secondary progressive -- it's all in the paperwork so the doctors can give you the drug they want you to have.  My MRIs point to secondary progressive (black holes, and atrophy), but my clinical course seems relapsing remitting.  They will call it what they want to.  If they said I had SPMS, I'd probably not have been approved for IVIg for lack of testing on this type of  MS course.  I'll tell you more as I (hopefully) continue on this therapy.  I don't see too many people in the infusion center getting IVIg for MS -- mostly people with immune deficiencies......but I am so happy to be there.  My immunologist at some point might want to add another drug to my therapy, but we are taking it slowly -- watching for exacerbations.  One day at a time.  I hope I answered [at least] most of your questions.  If you want to know more, don't hesitate to ask.  I hope all is well with you......what therapy(ies) are you on at this point and do you feel they are helping?  I hope to hear from you soon.  Bless you all.....I wish you health and vitality.

[funmonkeytoes]

I had a great response answering all of your questions (no, I don't think your nosy), and I swear all I did was hit the space bar and it disappeared.  Gone.  Now my hands are tired, and I am tired -- so I will re-write my answers as soon as I recover from this accidental loss of loads of info.  Jeesh.  Why does this always happen to me?  Be well!

[dowma]

Thanks for the information on IVIG.  I checked out the web site and it was very informative.  I'm recieving monthly IVIG for "neuro autoimmune disease" and now seizures but seem to get very sick after each infusion.  I know this isin't normally the case and most people get a boost of energy.  I on the other hand get terrible headache and nausea.  I wish you all the best and hope they can figure out why you get the terrible rash.  Again thanks for the information.  Mary Beth

[Momzilla]

OK, I see...We have to do our homework before we ask q's.  Gotcha.  Very interesting stuff there in your link.  Will read it and get back to you all!

Zilla*

[Momzilla]

Hi, Debra!

I'm so glad you posted about your treatment.  I really don't know ANYTHING about it, though.  And do you know what -- I supose I'm just nosier than I ever could have imagined!  Please, if you don't mind, let us know what type of drug IVIg is.

What was the course of your disease?  What caused you to go to a doctor in the first place and, of course, the biggie question here is....how did you come to be diagnosed?

Enqiring minds want to know....

The Enquirer*

[monotreme]

Hi Debra,
  Thank you for giving us this information.  I truly hope you can get rid of the rash when they switch brands again or at least may the biopsy show that the rash is not from the meds.  I remember you have small children and I pray that you can regain some energy and strength and become more mobile.
  Please keep us posted!!
   Elaine